Sunday Funday

We decided Sunday we were just going to have fun as a family.  It's been quite a while since we had a carefree day and I think we all needed it. 

We started off with 11am church service for the first time since Carson's surgery.  The 1st weekend in June kids move rooms so both kids finally got to go to their new rooms and meet their new teachers.  It was hard to leave Carson with someone we don't know with the situation the way it is right now, but it's only an hour and we both needed it!  After church we did Carson's first "on the go" feeding, aka tube fed him in the Car while we were driving. 

After a quick lunch and stop at Target we went Miniature Golfing.  It was more of a chase the kids around while they hit or tossed balls toward a hole, but they had fun and so did we.

After a great 18ish holes we decided to check out the spray park I'd read about in Rock Island.  It was so much fun!  It's right along the river and it just opened last year.  Lots of green grass and nice play ground equipment...add a bunch of water and it's every kids dream. 

Had so much fun yesterday we went back today (with swim suites this time).
 

Chylous Ascites

...Bet you don't know what the heck that is!

I didn't either until about five days ago because that's Carson's newest diagnosis.  The definition is "an abnormal condition characterized by an accumulation of chyle in the peritoneal cavity. Chylous ascites results from an obstruction in the thoracic duct that may be caused by a tumor or by a destructive lesion, resulting in rupture of a lymph vessel.". 

What all that actually means is that the fat that is normally absorbed into your body by the lymphatic system is leaking into his abdomen instead of being used as energy.  This caused increased pressure in his abdominal cavity causing bilateral hernias (they noticed the condition because of the hernia repair surgery). 

So now Carson gets to be on a NO FAT diet for the next 4-6 weeks.  That's right NO FAT!  My little kid that we've tried to "fatten up" for the last two years is not on a no fat diet and special formula, portagen.  The Portagen is apparently really gross tasting so he won't drink it and therefore he is back to being NG Tube Fed :(  and not just overnight feeds like we've done in the past.  He gets 2 feeds during the day and then over night also.

So this is what dinner time looked like the other night...notice the IV pole in the background with Carson's "Dinner" on it.  I've already come up with ways to work around the feeds including feeding in the Car.  Called our home health company today and they're sending us a backpack to try out.  Hopefully Carson will be able to carry it around so that'll make things a little easier.  Getting him to sit in one place for 30 minutes for a feed isn't the funnest thing I've ever done!

So that's pretty much where we are right now.  Carson had Bilateral Hernia Repair last Wednesday morning.  Thank the LORD he had no problems with anaesthesia this time.  We were in and out in about 5 hours.  He has recovered nicely from the procedure and now has two more scares to add to his collection.  If it's not one thing it's another with my kid!

Terrific Two's

Two years ago today we completed our little family. 

Can't believe it's been two whole years since I had Carson.  Wow what a ride it's been!  I thought the hard part was over when I delivered him that day...I was oh so wrong.  I would have never thought I could know the in's and out's of early intervention in two states or what Carson's white blood count usually is.  This isn't the life I would have chosen for our little man, but it is what it is and we will make the best of. 

The events of the last week make me thankful for my son.  I can't imagine our family without him and I look forward to lots of great memories in the future. 

Because of Carson's surgery we celebrated his birthday on Memorial Day and here are some pictures of our little party.      

I'm VERY Happy to be TWO!

Just because she's Cute :)

The Eeeeelmo Cake

They both played in the water/sand table for long time and LOVED it!

Then we played with Bubbles for a while

Cake

That about sums up his interest in the cake...not so much!

And we opened presents.



It was a great day with our family and I'm glad we did it early so Carson could enjoy it and we weren't worried all day about him hurting himself.

As for his recovery he is doing really well.  He seems like he's more and more back to normal each day.  We go back to see the surgeon on Tuesday for a check up.

Finally some good sleep!

Poat surgery day two was no fun at all. Carson was very agitated all day long and only slept for sort 15 minute naps every once in a while and in between he screamed and thrashed. It was really no fun at all. Finally we moved the bed out of the room and the chair over and I held him and he slept for 5 hours! And since then minus a few hours here and there Carson has been calm and very sleepy. He is still on the morphine iv, but know we also have an awesome little button to push to give him extra. His personality is showing through here and there too so it's good to see him coming back to us.

Here ar some tid bits of what's been going on
-Repeat CBC after blood transfusion was much better. WBC was up from .7 to 1.8.
-two ultrasounds were completed (6/1 & 6/2) both showed no flow in graft
-repeat dray yesterday was improved. Guy still sounds "junky"
-yesterday morning arterial line removed and dex stopped
-moved out of PICU about noon yesterday. Have I said how great the nurses are up there? They are!!

We were told last night by the nurse that they changed Carsons orders and he was getting no more blood thinners. I knew this meant that the graft had officially failed, but I was also pissed that the Resident just changed the orders and didn't even tell us. We pretty much new this was going to be the outcome since right after surgery, but still. If the graft had worked they'd have come in patting themselves on the back all day, but since it failed they can't even tell us that. I had the nurse get the Resident on the phone since he wasnt at the hospital so he could tell me. Would have liked to make him tell me face to face just to watch him squirm....I'm such a nice person. Dr Pitcher is great! We absolutely love him, but clearly he needs to teach his students some bedside manner...don't worry I'll be sure to let him know.

We got moved down to 3rd floor yesterday morning. To a double room :(. Not too happy about this but we are making it work. Our "room mates" from last night are ver nice people with a tiny 6 month old baby. They got good news this morning and will be leaving this afternoon.

Besides tha AJ and Emily brought Kay up to see us yesterday which was nice and mom sat with Guy last night so Dave and I could step out for a minute. We got dinner and picked up a DVD of Mickey mouse clubhouse for Carson. It's been emotional and we are tired, but only a couple/few more days and we should be out of here.

Thanks for all the toughts and prayers over the last week. This proceedure was the only one that will "fix" Carson that we know of so it looks like we will be on to managing the symptoms of this blood clot/portal vein hypertension. There are lots of things that can be done, but none of them will take the blood from his portal vein to his liver so they aren't fixes. So basically now we wait until we have a problem and go from there. Not exactly what we wanted for Carson, but as Dr P said, lots of people with PVT lead long normal lives. I just pray that this condition doesn't define who Carson is.

Today our goals are to get out of bed and to get him to drink some clear liquids!

CBC's and Ultrasound

In very "Carson" form his cbc's have been ridiculously low...so low that they thought the sample got diluted.  They repeated them and they really were that low.  His white blood count (the only number I actually know what the numbers mean) was at a .8 the first time and a .7 when they repeated it.  "Normally" Guys number is about 2.8-3.0 and "Normal" for actually normal people is about a 5.  They said all the other parts of the blood were very low too.  So we got a blood transfusion.  They transfused only red blood cells because they didn't want to increase his platelets which would increase his clotting. 

They came in and did the Doppler ultrasound a while ago.  The Doctor that did it didn't seem too excited, but didn't say no blood flow either.  Dr P said he was going to go find him and figure out what the results were and let us know.

Other than that pain management has been an issue today too.  Carson seems very uncomfortable and it's been challenging to try to get him to settle down.  They upped his morphine and dex to see if that'll help.

On a positive note we've weaned him down to 1L on the O2.

Time for me to get some lunch.

An Eventful 24 Hours

So the last 24 hours have been Interesting to say the least. Here are some of the "highlights".

-when we got to pre-op they pretty much immediately gave Carson Versed. Not sure if that was for the child or parents, but it did sure make that hour of waiting go fast. We got some awesome snuggles from Carson.

-the "day of surgery lounge" as it's called at the U where we got to spend a lovely 7 hours seriously needs some work. It's like a dr waiting room from 1980. My butt still hurts from the chairs and the privacy there is nonexistent.

-there was the nice family there that we sat across from. The mom was 45 and had an aortic anurism. It sounded like her surgery went as well as could be expected so that was great.

-I still think dr p is one of the nicest doctors I've ever met. When he came to tell us that he didn't think the surgery worked you could tell he was upset. He said he thought about closing him up when things didn't look so good for the graft, but he knew that Dave and I really wanted him to try. So even if it was a small chance he was going to do it.

-I got to see the inside of Carsons tummy. Dr p took pictures and shared them with us. Kind of freaky.

-when dr p met with us he told us we should get to see Guy in ten minutes. An hour later we asked and were told he was still in the OR. At two hours after freaking out just a bit I was just rounding the corner to go get some answers when I saw the receptionist talking to Dave. He was finally in the PICU and we could go see him. We headed up to the floor and as we got off the elevator the anesthesiologist was there and took us to tell us what had gone on. Sounded like when they attempted to extibate Carson he "crashed". Not sure if that's the right word, but his bp and heart rate dropped and they had to give him epinephrine to get him going again. She had trouble reinitiating him and ended up he was intibated three times. You could tell from her and the surgeons that was in the room that our Guy totally gave them one heck of a scare.

-our challenge now is pain management and his lungs. He had a partial collapse of one of his lungs and is sounding very congested. His O2 is sitting at 96 but that's on 2L of 100% O2. Goal will be to ween him off the oxygen today and see how that goes. They will also be taking out his arterial line and cath today so two less tubes. Right now he has 2 IVs, an arterial line, ng tube, oxygen canulas, heart monitor probes and oxygen monitors. When another Rex shunt mommy told be there would be tubes everywhere she wasn't joking! As far as pain goes he is on dexmedetomidine, tylenol and morphine and that seems to be working alright now. They added the dexmed last night because the morphine wasn't cutting it and because of that we got a decent night sleep. He wakes up every 4 hours like clockwork for an additional bolus of morphine (he is also on a drip) and his Tylenol and to freak out a little.

-we will have a Doppler study sometime today to see if there is any blood flow. No one here seems very optimistic.

So that's pretty much where we are now. Thanks to everyone for your prayers and we ask that you keep them coming. I'll be sad if we did this for nothing and the shunt doesn't work, but I know neither Dave nor I would change anything. We figure if we didn't try we would always wonder and the longer the veins in the liver sit empty the more "damaged" they become so the chances of it working would have been even less.